ME:How is the knowledge center placed in the organization? By this is meant, is it an independent unit under the Head-Neuro-Center, or is the knowledge center located under the Research Clinic for Functional Disorders?

FFL: The knowledge center for ME/CFS is located under theResearch Clinic for Functional Disorders, which is part of the Head-Neuro-Center, Aarhus University Hospital.

ME: May we ask for a project description with objectives and budget for the knowledge center?

FFL: The Danish Health and Medicines Authority has asked the Central Denmark Region to establish a ME/CFS knowledge center. This unit is currently under construction, and we are in the process of finding the best way to solve the task and respond to the needs of the patients. As the function is a general part of theResearch Clinic for Functional Disorders, there is no actual project description. Regarding the economic frame, Aarhus University Hospital has allocated 1,3 to 1,5 million annually for the operation of the knowledge center.

ME: Chronic Fatigue Syndrome Advisory Committee[1] has recommended that the use of the ME/CFS guidelines[2] (called “The Primer”) become widely used. Is the knowledge center also going to recommend and the use these guidelines?

FFL: So far, we will lean towards the British NICE criteria for ME/CFS.

ME: What treatments will the knowledge center use for ME?

FFL: There will primarily be used types of treatment, where there is scientific evidence for the effect for patients with ME/CFS. At present, these are cognitive therapy and graded rehabilitation. But we will keep a close eye on the research carried out both nationally and internationally, and naturally we hope for new and better treatments for this severely affected patient group. We hope that we also will get the opportunity to test new treatments in clinical trials, but there is not currently embedded economy for research. In addition we are in the process of building a wide network of collaborators from various medical specialties, including neurologists, infection, physicians, endocrinologists and rheumatologists. We are also working to be able to draw upon a rehabilitation unit, as there may be a need for hospitalization and rehabilitation of the worst patients, which in some cases are bedridden and need a much more intensive help than that offered in outpatient settings. Finally, we are in the process of exploring the possibilities of working with one of the diagnostic centers, some hospitals want to establish. We hope through these initiatives and the broad range of expertise that is available, to provide patients with ME/CFS better treatment in the future.

ME: Has the knowledge center plans to participate in the testing of Rituximab for ME?

FFL: The study, which has been trying to treat patients with ME/CFS with Rituximab is interesting. We have no current plans to investigate the effect of Rituximab, since it is a treatment with very high risk and there is still only very sparse documentation of the treatment. We know that there are studies underway elsewhere and will await these results before we take further initiatives in this area

ME: Has the knowledge center plans to cooperate and gain knowledge from other ME centers, such as Chronic Fatigue Center[3], Open Medicine Institute[4], the PHANU group[5], Whittemore Peterson Institute[6] or ME/CFS senteret[7]?

FFL: We have a wide cooperation both nationally and internationally. We do not at this stage have a collaboration with the centers, that you mention, but within the area of CFS, we work, amongst others, together with Peter White (Professor of Psychological Medicine, Centre for Psychiatry, Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, St Bartholomew's Hospital, London).

FFL:Thereisnotcurrentlya formalcollaboration withthe Working Group "Clinical AutoimmunityWorking Group". Butweareat an earlystagein the building ofthe knowledge center, we can notrejectanypossible futurecooperationwithanyone.ME:May the MEAssociationget arepresentativetothemeetingstaking placeaboutthe establishment and operationof the knowledge center?

FFL: The knowledge centre forME/CFSis part of theResearchClinic for FunctionalDisorders,'daily operationsandwork. Thereisno independentboard of directors oradvisory group, and there arethereforenotindependentmeetings whereit would be appropriatefora representativefrom theMEAssociationto participate.

To raise awareness of ME, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME has joined with the Alison Hunter Memorial Foundation of Australia - in cooperation with BondUniversity and University of East Anglia - to establish a Clinical Autoimmunity Working Group

To raise awareness of ME, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME has joined with the Alison Hunter Memorial Foundation of Australia - in cooperation with BondUniversity and University of East Anglia - to establish a Clinical Autoimmunity Working Group